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Thread: Luka's SM Update

  1. #1
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    Default Luka's SM Update

    Luka's Gabapentin has been increased to 4 times a day and he gets codeine 3 times a day. He also has Rimadyl which is supposed to be delicious but he won't eat it unless it is in a pill pocket. He gets that twice a day, air scratching is minimal.

    We will be trying acupuncture next. Over all Luka is looking better. He has a healthy heart and is over all doing much better. SM is not the end all, I think as owner's most of us that get the diagnosis with the first dog, panic.

    Dr. Kline said that this is no different than living with a disability. She seems very pro medication, and not so keen on surgery because of the extensive damage to his spinal cord already. If there is a sign of progression she is for surgery but seems to be more oriented with treatment.

    Thanks for all your support and input.

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    Glad to hear Luka is feeling better. I hope he continues to improve with all the medication and of course love
    Mel
    Momma to Leonardo (Leo to his friends)

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    Big hugs for Luka. He is lucky to have such a wonderful loving mom as you.

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    The general experience seems to be that getting the medication - both variety and dosage - right is a matter of trial and error for a few weeks or months, so let's hope you've now found the right mix to keep Luka comfortable.

    Kate, Oliver and Aled

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    I am so glad that Luka is getting the meds to help him and that surgery can be put off for awhile. Its great news! Hearing what you said helps me as a new puppy owner that this will not be a death sentence, that there are things that can be done to give your dog a good life. Becky

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    I am glad that the mix of meds is working -- great news, and that gives you time to consider options as things go along.

    I cannot agree with Dr Kline however agree that dealing with SM is like dealing with a disability. Most define a disability as an impairment to normal activity. While this may be an accurate description for a subset of cavaliers with symptomatic SM, it is still almost always progressive and for significantly symptomatic dogs (and many will eventually progress to that point) it often eventually requires euthenisation regardless of whether one opts for surgery or meds (see Clare Rusbridge's report on this). I am not sure many on the medical side would use 'disability' to accurately sum up what sufferers of SM, whether humans or our dogs, live with. To me, and I have three dogs with condition and have worked with/spoken to several of the key researchers and to others with affected dogs for going on 8 years now) that's like describing cancer or any other life threatening, often progressive condition as a disability. For the same reasons, I could not describe MVD as a disability and I think it would be hard to find a cardiologist who would consider it a disability as opposed to a potentially life-threatening and often extremely debilitating serious illness.

    Most of us with affected dogs do not live with the certainty of management options we might have with a dog with a disability. I have had animal with disabilities, such as an amputated leg, deafness, etc. My only uncerainty with those conditions was making sure the animals did not get outside off lead, Or a mild concern about some increased prospect of arthritis. With SM cavaliers, you live with a day and day out concern that today may be the day a screaming fit happens, that meds cease to help, that you need to make a rushed decision on surgery or euthenisation. You have to weigh up every day how much pain the dog is living with, despite what the medications mask and the small comfort that they bring. Plenty of humans with the conditions say drugs do very little to help with the severe headaches or the disturbing skin crawling sensations, that we may only see in our own dogs manifested by occasional scratching–and no dog can tell you whether it has an unbearable headache (those who the face rubbing signs may sometimes indicate some degree of that). Human neurologists have very few tools to help people live comfortably with this condition, and as with the dogs, surgery often has to be repeated. If we choose not to have surgery for our dogs, we live every day with the concern that this has been the wrong decision. If we do the surgery, we live every day with the worry that this has been the wrong decision. Whatever the choice, you fear that it will eventually result in a dog needing to be euthanized earlier than what would have been the case if you hadn't intervened in the way that you did. of course, you do put it to the very back of your mind, but I have lived with this with one dog for over six years, and that worry is always there and increases over time rather than recedes. Any additional MRI almost always shows that a syrinx has grown.

    I just cannot see how anybody could describe SM as a disability. Perhaps it is just a matter of semantics amongst neurologists, but using the word “disability” implies a fairly static, understood condition with some ease of management and care options that most evidence would suggest simply is not the case, especially for dogs with significant syrinxes and early onset symptoms. I guess the main concern for me is that as a term it gives a false sense of security that even those with dogs with few symptoms or a small syrinx just do not have, because you're always living with the prospect of progression–which can often be sudden and swift.

    I am curious to know if others with affected dogs see it as a disability?
    Karlin
    Cavaliers: Jaspar Leo Lily Tansy Libby (foster) Mindy (foster)
    In memory: Lucy
    Cavalier SM Infosite:www.smcavaliers.com

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    Quote Originally Posted by Karlin View Post
    Most define a disability as an impairment to normal activity.
    To be honest, I have never thought of Bosco's SM in terms of disability.
    If I'm explaining to someone what he has, I call SM a 'condition', and in my own mind, whenever I see symptoms such as air scratching, or when he gets into a state rubbing his little face on the floor I always think of him having an 'affliction' - def: somthing that causes pain or suffering.

    I'm glad to read that Luka is more comfortable now, good luck with his accupuncture.
    Last edited by Charlifarley; 14th June 2011 at 04:41 PM.
    Shirley
    A comfy lap for
    Trapper - tri boy Feb 2004, Bosco - ruby boy Jan 2008

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    I am quite shocked to hear SM described as a disability - I would not view it as such other than as a specific part of the condition if they are demonstrating lameness and neurological defects but these can be changeable too - and obviously they can become unable to access furniture or stairs and steps.

    As someone who lives with a disability, and also has a very painful facial nerve pain condition, I am perhaps well placed to know the difference and how I feel about the two separate conditions. I totally agree with Karlin, she has written far more eloquently that I would have managed and expresses how I feel. Like Karlin, I have also owned dogs with disabilities and also multiple dogs with Syringomyelia, which does feel like a timebomb - it is an emotional rollercoaster and you are constantly watching for changes.

    With disabilities it is difficult at first whilst you make changes to your environment, lifestyle and management [safety being the primary concern], but once these are in place there is little change and not the same emotional burden [nor generally the financial one]


    Perhaps you would be kind enough to go back to Dr Kline with our comments - I really do not feel that this is something that should be being said to guardians of dogs with SM.


    Management - often a cocktail of drugs is far more effective for management. I personally would be reluctant to give Rimadyl long term there are other safe options available, I'm sure you've seen the treatment chart on Clare Rusbridge's website.

    Gabapentin tends to only be effective for 6-8 hours so four times daily can be helpful. Teddy was on 900mg daily which is the maximum [and extremely high] dose.


    If you go for Acupuncture make sure it is someone knowledgeable about the condition as otherwise this could cause further problems.



    We hope that Luka will continue to do well for a long time yet, it's wonderful that you have been able to get him the treatment he so obviously needed.
    Nicki and the Cavalier Clan Our photos www.scotlandimagery.com
    Supporting www.rupertsfund.com and www.cavaliermatters.org

  9. #9
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    Quote Originally Posted by Karlin View Post
    I am glad that the mix of meds is working -- great news, and that gives you time to consider options as things go along.

    I cannot agree with Dr Kline however agree that dealing with SM is like dealing with a disability. Most define a disability as an impairment to normal activity. While this may be an accurate description for a subset of cavaliers with symptomatic SM, it is still almost always progressive and for significantly symptomatic dogs (and many will eventually progress to that point) it often eventually requires euthenisation regardless of whether one opts for surgery or meds (see Clare Rusbridge's report on this). I am not sure many on the medical side would use 'disability' to accurately sum up what sufferers of SM, whether humans or our dogs, live with. To me, and I have three dogs with condition and have worked with/spoken to several of the key researchers and to others with affected dogs for going on 8 years now) that's like describing cancer or any other life threatening, often progressive condition as a disability. For the same reasons, I could not describe MVD as a disability and I think it would be hard to find a cardiologist who would consider it a disability as opposed to a potentially life-threatening and often extremely debilitating serious illness.

    Most of us with affected dogs do not live with the certainty of management options we might have with a dog with a disability. I have had animal with disabilities, such as an amputated leg, deafness, etc. My only uncerainty with those conditions was making sure the animals did not get outside off lead, Or a mild concern about some increased prospect of arthritis. With SM cavaliers, you live with a day and day out concern that today may be the day a screaming fit happens, that meds cease to help, that you need to make a rushed decision on surgery or euthenisation. You have to weigh up every day how much pain the dog is living with, despite what the medications mask and the small comfort that they bring. Plenty of humans with the conditions say drugs do very little to help with the severe headaches or the disturbing skin crawling sensations, that we may only see in our own dogs manifested by occasional scratching–and no dog can tell you whether it has an unbearable headache (those who the face rubbing signs may sometimes indicate some degree of that). Human neurologists have very few tools to help people live comfortably with this condition, and as with the dogs, surgery often has to be repeated. If we choose not to have surgery for our dogs, we live every day with the concern that this has been the wrong decision. If we do the surgery, we live every day with the worry that this has been the wrong decision. Whatever the choice, you fear that it will eventually result in a dog needing to be euthanized earlier than what would have been the case if you hadn't intervened in the way that you did. of course, you do put it to the very back of your mind, but I have lived with this with one dog for over six years, and that worry is always there and increases over time rather than recedes. Any additional MRI almost always shows that a syrinx has grown.

    I just cannot see how anybody could describe SM as a disability. Perhaps it is just a matter of semantics amongst neurologists, but using the word “disability” implies a fairly static, understood condition with some ease of management and care options that most evidence would suggest simply is not the case, especially for dogs with significant syrinxes and early onset symptoms. I guess the main concern for me is that as a term it gives a false sense of security that even those with dogs with few symptoms or a small syrinx just do not have, because you're always living with the prospect of progression–which can often be sudden and swift.

    I am curious to know if others with affected dogs see it as a disability?
    I think you are getting caught up with semantics, I think she meant to say it as a comfort that while his illness is going to end his life prematurely at some point in the future, the care management aspect is no different than someone who needs accommodations.

    It didn't offend me, as someone who was in her office crying hysterically before, I think she was just trying to say that there are several options before surgery. She is very for Rusbridge's approach in treatment and mentioned I should research her writing on SM, which I have.

    When you have a disability you always live with the prospect of progression.

  10. #10
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    Quote Originally Posted by Nicki View Post
    I am quite shocked to hear SM described as a disability - I would not view it as such other than as a specific part of the condition if they are demonstrating lameness and neurological defects but these can be changeable too - and obviously they can become unable to access furniture or stairs and steps.

    As someone who lives with a disability, and also has a very painful facial nerve pain condition, I am perhaps well placed to know the difference and how I feel about the two separate conditions. I totally agree with Karlin, she has written far more eloquently that I would have managed and expresses how I feel. Like Karlin, I have also owned dogs with disabilities and also multiple dogs with Syringomyelia, which does feel like a timebomb - it is an emotional rollercoaster and you are constantly watching for changes.

    With disabilities it is difficult at first whilst you make changes to your environment, lifestyle and management [safety being the primary concern], but once these are in place there is little change and not the same emotional burden [nor generally the financial one]


    Perhaps you would be kind enough to go back to Dr Kline with our comments - I really do not feel that this is something that should be being said to guardians of dogs with SM.


    Management - often a cocktail of drugs is far more effective for management. I personally would be reluctant to give Rimadyl long term there are other safe options available, I'm sure you've seen the treatment chart on Clare Rusbridge's website.

    Gabapentin tends to only be effective for 6-8 hours so four times daily can be helpful. Teddy was on 900mg daily which is the maximum [and extremely high] dose.


    If you go for Acupuncture make sure it is someone knowledgeable about the condition as otherwise this could cause further problems.



    We hope that Luka will continue to do well for a long time yet, it's wonderful that you have been able to get him the treatment he so obviously needed.
    I really don't think she meant disability is a negative connotation. I didn't take offense to it, in a way it made me feel better to know this illness can be managed.

    I didn't know a chart existed I am at the tail end of school and catching up.

    He's been diagnosed for less than a month now. Obviously, I have a lot to learn still.

    I don't know much about Rimadyl other than it is an anti inflammatory.

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